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Life is complicated when you don’t have the tools you need

LAL

Turkey

Growing up with PKU in Istanbul has generally been “lucky”, Lal tells us. Although varied and vibrant, “like a huge world within a small city”, for PKU patients there is a lot of potential for connecting with patients and medical support.

A lot of patients across Turkey are not as fortunate

“Most of the Turkish population lives in the East,” Lal says. “[For PKU patients there] there is not enough financial support and they don’t have enough health services.”

Although support is available when babies with PKU are born, a lot of patients tend to drop out of medical care later in life and they tend not to be followed-up with by their doctors, explains Lal.

“There are approximately 10,000 PKU patients across Turkey and only 50 metabolic doctors to take care of them,” Lal says. “That’s a big issue – we have a lack of doctors and a lack of metabolic centres.”

Lal manages her PKU through strict diet management, which her mother, Deniz, has helped her with throughout her life.

“My very first memory of PKU was when I was four or five, and we were on vacation with my parents. We were eating dinner, and someone had ordered rice for me. Somehow, we learned that the rice included meat sauce, but it was too late. I remember my mum was really panicked. She was screaming and so scared.”

 

Our patient association would host summer camps with other patients but I didn’t want to go because they affected me in a bad way.

“The patients were so negative, they hated their diets, they hated themselves. They would come to me and say, ‘I have this chocolate, do you want to taste it?’ They’re off diet and they don’t care.”

“I can understand of course wanting to eat things you can’t – but what I can’t understand is how they can forget about the mental effects of eating protein, or just eating because they want to be accepted by their friends or just go to a concert and get drunk.”

Although Lal has lots of support from her friends, family, doctors and the PKU patient network, there are times when it can still get her down, particularly if her PHE levels are high.

“I have had problems with concentration, I just felt tired and didn’t have the will to do something. I had this moment when my anger was really high. When your PHE levels are high you get stressed and become really angry – it really changes your emotions and concentration.”

However, overall Lal knows that she’s a stronger person because of her PKU. “The strength I have today is thanks to PKU because when I was born I learned how to deal with challenges. I learned how to love myself, how to accept myself, how to take care of myself.”

Nowhere is this truer than when Lal is in the dance studio. When talking about theatre and dance, her face lights up.

Play

“Theatre and stage will always be a part of my life because it’s a really precious moment when you just give a part of yourself to the audience. Dance is something else for me, it helps me to push my limits.”

< Watch Lal’s story